照片:Anastasia Blackman

米奇·霍格有任务了. 阿尔茨海默氏症根本没有机会.

BC受托人, 她的父母都死于这种致命的疾病, 已经成为全国最主要的治疗筹款人之一了吗. 

阿尔茨海默病,影响6.700万美国人, is the sixth leading cause of death in the United States and the fifth leading cause of death among adults sixty-five or over. 然而,它仍然是一种无法预防或治愈的疾病. BC受托人Michaela " Mikey " Hoag ' 86, P’14, 她的父母都死于老年痴呆症, has made it her mission to change that—and in the process has become one of the nation’s most successful and prominent fundraisers for the cause. 她是“部分云”运动的幕后推手, which on behalf of the Alzheimer’s Association has raised $68 million for Alzheimer’s research, 她甚至成功地说服比尔·盖茨(Bill Gates)写了一张(相当大的)支票. 公元前杂志 sat down with the award-winning Alzheimer’s fundraiser to learn more about her quest for a cure.


你和你丈夫住在加州, 松鸦, 1994年你父亲被诊断出患有早发性阿尔茨海默病. 当你第一次收到这个消息的时候是什么感觉?

这是毁灭性的. 我感到措手不及. 我是六个兄弟姐妹中的一个,我所有的兄弟姐妹都住在新泽西州我父母附近. 每个人都在身体上和情感上帮助我. 我感到迷茫,于是我问自己:“我在这一切中的角色是什么?“所以,杰伊和我决定投资阿尔茨海默病的电子游戏正规平台. We contacted the Alzheimer’s Association and made a gift because when we started looking for answers, 什么都没有. 没有毒品,就没有前进的道路. 没有什么.

While you were dealing with your father’s illness, your mother was diagnosed with Alzheimer’s.

当我妈妈在2011年得到诊断时,我决定要把这件事公之于众. 我需要谈论这种没人愿意谈论的疾病. 我需要让人们知道,谈论它是可以的, 因为如果我们不谈的话, 我们永远也找不到解药. 

你在新泽西的一个农场长大,在那里你喂鸡,捆干草. That’s not the most obvious background for someone who’s playing a lead role in the fundraising for a cure to a deadly disease.

At BC, you are taught to roll up your sleeves, get involved, and try to make an impact. 阿尔茨海默氏症不是我想要的东西, 但我们的耶稣会教育告诉我们,当你需要投入的时候, 你跳进去. 对我来说, 阿兹海默症是需要治疗的, 我相信这是我们力所能及的.  

To jump in, you launched the Part the Cloud Gala, on behalf of the Alzheimer’s Association, in 2012. 你对开幕式有什么期待?

我的一个朋友对我说, “我们中有很多人都被阿尔茨海默病所感动. 你得办个筹款活动.” I told her, nobody is going to show up on a Saturday night for an event for Alzheimer’s. 没人愿意谈论这件事. 尽管如此, I pulled together a committee of people who I knew were affected by Alzheimer’s to plan a fundraiser. 直到活动前两个月,我还不确定它是否会发生. 我们没有钱,我们需要一个歌手, and no performers would associate themselves with Alzheimer’s because they felt that if they did, 人们会以为他们得了这种病. 然后,通过一个朋友,我们让托尼·班尼特同意无偿演出. 活动门票立即售罄,我们筹集了200万美元. 简直令人震惊, but it made me realize that there was a willingness to help fight 这种疾病 that none of us had imagined. 

我这么做不是为了荣誉. 我这么做是为了戒掉毒品 这种疾病. 这才是让我兴奋的,而不是奖项.

That low-expectation gala has become a regular event that’s raised more than $68 million.

The momentum has continued every year through the biennial Part the Cloud Gala and Part the Cloud Luncheon. 我们现在是世界上最大的阿尔茨海默病电子游戏正规平台的推动者之一. 目前有178项阿尔茨海默病试验正在进行中, 我们已经资助了其中的65个, 在九个国家, 这些试验的后续资金已达到1美元.430亿年. 在分割云之前, the Alzheimer’s Association didn’t have a dedicated funding stream for late-stage drug development. So, we’re focused on getting human trials started in the hopes that other funding sources like the federal government or venture capital investors will fund them. 

In 2019, Bill Gates made a personal gift of $10 million to the Alzheimer’s Association that funded a matching-gift challenge and spurred an additional $20 million in private funding for Part the Cloud’s global research programs. 

比尔·盖茨对我们的努力贡献巨大. 我在报纸上看到他父亲得了老年痴呆症, 所以我做了一个ppt,让一个认识他的朋友发给他. 几个月过去了,什么也没发生. 所以我们重新做了ppt,我朋友把它转发给了他. 一年过去了. 我丈夫对我说:“已经一年了. 你必须放手.” Two hours later, an e邮件 came in from Bill Gates that said, “You and I need to talk. 你做的正是我的团队要找的.“所以,我相信世界上有天使,我的父母就是其中之一. 

疾控中心称大约有6人死亡.700万美国人患有阿尔茨海默病, 预计到2060年,这一数字将增加两倍. 该国是否为即将到来的卫生危机做好了准备?

一点也不. 这些数字并没有显示出所有的老年痴呆症患者. 例如, 当我父亲去世时, 他死于肺炎, 他的死因就是这样被记录下来的, 尽管他患有阿尔茨海默病已经12年了. 随着我们寿命的延长,这些数字将会迅速翻倍. 所以,这是我们绝对需要走在前面的. 

尽管你筹了那么多钱,资助了那么多电子游戏正规平台, there are still no effective interventions that delay or stop the progression of Alzheimer’s disease. 你如何保持希望?

因为我看到了隧道尽头的光明. 2023年,FDA批准了Leqembi, 这是第一个针对这种疾病潜在生物学的治疗方法, and in 2024 we hope to have a blood test available that will determine where people are with the disease and an eye scan that could enable people to see if Alzheimer’s is in their future. These breakthroughs will allow the trial costs to come down and more people will want to be a part of them. The government is aware that Alzheimer’s is a tsunami that is going to bankrupt Medicare and Medicaid, 因此,他们越来越多地投资于电子游戏正规平台. 还有更多的制药公司开始加入到这个行列中来. 所有这些都给了我希望. 

TK

  图片来源:Spencer Brown

Age is the best-known risk factor for the disease but family history is also a risk factor. 你的祖母和你的父母都死于老年痴呆症. 你和你的兄弟姐妹有多担心它可能是遗传性的?

我一直在想这件事. 但对我来说,我需要进攻而不是防守. 我经常对人们说,“如果我被诊断出来,你知道我会很痛苦.” Alzheimer’s is not something I can live in fear of, because that is not going to be helpful. 

你赢得了多个奖项, 包括全国最佳健康筹款活动的圣歌奖, 阿尔茨海默病协会的杰罗姆. 阿尔茨海默病电子游戏正规平台斯通慈善奖. 这些荣誉对你来说意味着什么?

我这么做不是为了荣誉. 我这样做是为了找到一种药物来阻止这种疾病. A researcher from Canada who applied three different times for a Part the Cloud grant, 两次被拒绝, 告诉我, “我几乎要放弃我的电子游戏正规平台了, 但每次被拒绝之后, 阿尔茨海默氏症协会给了我一份同行评议,告诉我需要改变什么. 当我终于拿到"云"的戏份时, 我获得了一百万美元的奖金, 后来,我的电子游戏正规平台获得了1300万美元的后续资助. 现在我们有一种非常有前途的药物进入了第三阶段.“所以,这才是让我兴奋的,而不是奖项. 

What are some of the current research initiatives and clinical trials that bring you hope?

重新利用的药物是最让我兴奋的. 例如, there is a drug out of Colorado for bone marrow transplant that we funded that also reduces the inflammation in the brain and reboots the cells. 有太多的可能性了. 他们都给了我对未来的希望. 

What advice would you give to those whose loved ones have been diagnosed with Alzheimer’s?

The stats will tell you that the person taking care of someone with Alzheimer’s will break before the person with Alzheimer’s does. 所以,允许自己寻求帮助. 每天给自己几个小时的休息时间, because when that person you love starts to revert into a child who is incapable of retaining the lessons you are teaching them, 它很快就会让看护人在情感和身体上精疲力竭. 

Where can people turn to get a better understanding of how to deal with an Alzheimer’s diagnosis?

The Alzheimer’s Association is a vital resource for advice on everything from financial and legal planning to daily care options. It also has local chapters that are very helpful because they offer counseling and information sessions that help clarify what life with Alzheimer’s entails. Each person reacts to the diagnosis differently, whether it is through anger or despondency. 只是对每个人的影响不同. So, I would recommend contacting the Association’s 24/7 hotline (800-272-3900) and visiting alz.网站获取诊断后该做什么的信息.   

人们如何帮助对抗阿尔茨海默病?

你知道这归根结底是资金问题. 归根结底,我们需要更多的试验. Right now, there are 141 unique drugs in the pipeline, many that have been funded by Part the Cloud. 管道正在增长,但用体育运动来类比,我们需要更多的射门. 癌症有5000次试验. We need more funding for researchers so that the studies that are in the labs can then go to help people.